I just got diagnosed a few days ago with prostate cancer, Gleason score of 6-7. I have had the j-pouch for a little over 20 years and have had my issues with pouchitis, etc. I'm 64 years old, and I think in reasonably good health otherwise.
Has anyone here had recent experience with the various treatments?
Thanks,
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Hey!
Have you been able to identify a doctor who can remove the prostate?
My father was diagnosed a few weeks ago. The cancer hasn’t spread, but he needs to do something soon.
He wants to pursue the prostate removal, but his doctors in Dallas don’t have experience with it in J-Pouch men and don’t want to do it.
Thanks for your help!
Mike
Are you doing better???
I’m in Orange County ca. Just got diagnosed with prostrate cancer looking for a surgeon myself. Have you had any luck locating one?
Hey @sahbumnim! So sorry for your diagnosis! Trust you’re on a platform where you’re not alone!
My father was diagnosed at the end of June! After searching and being referred to numerous doctors, we found a few! The one we went to and had great success with was Dr. Jeffrey Karnes at the Mayo Clinic in Rochester, MN!
When we spoke to him in August he admitted prostatectomies in J-Pouch patients weren’t all that common, but mentioned he had actually successfully performed 2 in the last 6 weeks (look at God’s timing!)! We knew right away this was our guy!
My father gets his updated PSA in 35 days or so (to confirm he’s cancer free), but we’re praying and claiming he is in fact cancer free now!
Will certainly be praying for you! You WILL be just fine! @sahbumnim
I am sorry to hear that honey! I hope everything goes well for you! I hope the surgery you get is a success!
Please let us know how everything goes, sending love your way <3 
Thank you for the prayers
Hello, Is there a follow up on this subject? What was the outcome of the surgery? My husband too has prostate cancer and is running out of options.
Thank you!
Hey! My father had a successful prostatectomy in September of 2021. His 3 subsequent PSA tests have confirmed that there is no cancer. He’ll have another PSA in the next month or so. We’re praying that test confirms he is still cancer free.
Jeffrey Karnes at the Mayo Clinic in Rochester, MN did my father’s prostatectomy. There are others we consulted with that can do the procedure as well.
What are some of the questions you have that I may be able to answer?
Thank you so much! We are in LA. The docs here (UCLA and Cedars) say the prostatectomy is not an option because of adhesions and difficulty getting to the prostate. They say that if they do it, they run a high risk of incontinence. He had radiation once and the cancer came back (Gleason 4+3). He is taking hormones, and the PSA is coming down but has terrible side effects. We are considering either a Tulsa Procedure or a second round of radiation (salvage). Both are risky. He is 78 and otherwise in good health. Plays golf 5 days per week, travels and has a very positive attitude. I think surgery may be an option - but not here; a consultation with your doctor may be a great option us. We cannot find a surgeon in LA that has done the prostate removal with a patient on a j-pouch! Thanks again.
I have a jpouch and had a successful prostectomy in December. My surgeon is the best in the world out of USC Keck Urology. Indibar Gill
We already spoke to him! He thought (6 years ago) that the surgery would be too tricky - had never done a j-pouch prostatectomy and may just have to open him and close him up. He thought there was a high risk of failure. He has lots of adhesions. But then again, it is 6 years later and maybe it is time to talk to Gill again. Sorry to ask, but are there any incontinence issues for you?
thank you!!!!
No incontinence.
many thanks!
My dad doesn’t have any issues with that, thankfully.
Dr. Karnes warned that there was a chance of permanent incontinence and a chance that the j-pouch could be violated. These were the same reasons 3 “top rated” doctors in TX refused to do the prostatectomy on my father. However, as stated, my father’s procedure was a huge success! My father’s numbers were astronomically high. So high, one doctor said that surgery was a futile attempt at removing the cancer, because although imaging showed the cancer hadn’t spread, it more than likely had with a PSA score of 24.
On the surface it made sense, but we kept the faith and got a successful result!
Best of luck with the next PSA and thank you for sharing your information.
Thank you! Will be praying for you and your husband! Don’t hesitate to reach out if you have any questions! God bless
Got my pouch in 2003. Had my prostate surgically removed 01/2021. Dr. Bo Shen at Columbia Presbyterian NYC is following my pouch. Prior to surgery I consulted with radiology/freezing/surgery. The consensus was surgery. Dr. Joel Decastro was my surgeon. He had prior experience with pouch patients. Very pleased with him. A couple months later I started having incomplete emptying and pouchitis. Defocagraphy and manometry determined my pouch had lost the support that my prostate provided to the pouch. My pouch was also twisting when emptying. Citroen covered the pouchitis. Dr. Shen placed rubber bands in my pouch to expand it, and create scar tissue inside. The purpose was to create scar tissue inside and stiffen the pouch. The bands come out while defecating. Was also prescribed bio feedback physical therapy to retrain my pouch to work properly with my anus. Early in the PT but I have seen some relief. In the middle of all that i learned I had a bacterial infection from yersinia. Most often caused by consuming undercooked pork. Symptoms resembled pouchitis. Still, I am glad I had my prostate removed. Best of luck.
Thanks so much. All his doctors are so against the surgery! Cannot get anyone to agree to it! This is very valuable information.
We also went to Bo Shen but he was with the Mayo Clinic in Cleveland at the time; it was a few years ago. We went for a second opinion after the j-pouch was in for about 2 years and my husband was going to the bathroom at least 12 x day. He is down to about 7 or 8 (mostly at night), but were are use to it now.
If the LA docs continue to not agree to the surgery, we may have to start looking into your surgeons.
Thanks so much for responding.
One more quick question - did you have adhesions? That is the main concern form the LA surgeons; not being able to get to the prostate because of the adhesions.
Thanks!
Hey @Wife!
My father saw 3-4 urologists in Dallas and all of them had the same concerns with surgery (scar tissue his j-pouch created). They all warned of potential fecal leakage and j-pouch failure if something went wrong during surgery.
However, after doing some googling we actually came across Dr. Bo Shen and setup a meeting with him to discuss. This was around June of 2020. He was absolutely against radiation which was what the Doctors in Dallas were opting to go with, even though my dad’s PSA and grade of cancer was off the charts. Dr. Shen feared that the J-pouch would fail because of the radiation.
We ended up getting my dad’s prostatectomy done at the Mayo Clinic a year ago last week actually and everything couldn’t have gone better! I’ll copy and paste the 3 doctors we consulted before finally deciding to go with the doctor at the Mayo Clinic.
Jeffrey Karnes at the Mayo Clinic in Rochester, MN did my father’s prostatectomy.
Another doctor we consulted was at The Cleveland Clinic. The other was at MD Anderson in Houston. I can get those names if you like.
Everything will work out just fine though! I truly believe that!
I did not have adhesions. I have been with Dr. Shen for many years. I started with him at Cleveland and followed him to NYC. I am. In NY State about 4 hours north of the City. It was about 6 hours to Cleveland so it was a plus. My pouch surgeon was David Halleran in Syracuse. He was not able to get my issues at the time under control. He encouraged and assisted me in getting an appt. with Shen. After my first scope by Shen, he complimented Halleran for the good job building my pouch. I have much faith in all the doctors imentioned.
cannot thank you enough!
do you mind sharing his age? just for reference and comparison. My hubbie is 78. super healthy and completely active otherwise. thx!
I am 60. Very active.
My father is 62
that may play a big role. Your dad is a lot younger. thanks!
A lot of factors play a role, but I believe everything will work itself out!
I recently had my prostate removed in Jan of 2022 and I am 70. I got my J-Pouch in 2000 and have had very good luck with it these past 21 years. I was diagnosed with cancer nearly a year ago. I couldn't find a surgeon anywhere in the Michigan area, even though there are many J-Pouchers in the Metro-Detroit area.
I had many adhesions with several blockages over the first 5 or 6 years. So my options were going to be complicated, no matter which route I chose.
I was going to go with external beam radiation, until I saw my original J-Pouch surgeon and he said absolutely not. He said no matter what the radiation doctors tell you, they can't be as accurate as they need to be with the external beam. But, he suggested the high dose radiation method where they implant radio active seeds within your prostate, which in turn kills the prostate and the cancer. So, that seemed like a great alternative, until I went thru all of the testing and the prostate was too dense (or something) and I wouldn't be a good candidate for that.
So, back to looking for a surgeon who had experience. The radiation Doctor knew Dr Karnes and recommended hom. I took a ride and spoke with Dr. Karnes at the Mayo Clinic in MN and he said he was very familiar with J-Pouches and prostate removal. I was very comfortable with him and what he said and everyone I met there. Rochester MN is a 12 hour drive for me and I was dreading the drive home a few days after the surgery.
So, I cold called the Cleveland Clinic whis is less than 3 hours from me. They referred me to Dr. Kaouk who was also familiar with prostates and J-Pouches. I drove to the Clinic to meet with Dr Kaouk and his assistants and once again, I was very comfortable with what he said and how he was going to handle everything.
Since I would have to travel to see either Doctor, I chose the Cleveland Clinic only due to the shorter drive for me. Both Doctors seemed more than qualified and personality played no part, strictly 3 hour drive VS 12 hour drive after surgery. Dr Karnes prefers an open surgery while Dr. Kaouk uses the latest single port DaVinci robot for surgery.
The bottom line is that I am happy I went with Dr Kaouk and robotic surgery. I have a single 2" scar from the surgery, instead of a longer scar from an open type surgery. When I woke up in the recovery room was in absolutely no pain. I spent the night in the hospital and went home at 11am. I was never in any pain. The pain scale never went above a 1 or 2 - I could bend and get out of bed without problems and it never really bothered me. He used superglue on me and that began flaking off after a few days and still no pain even when I washed the incision...
So, that is my long winded prostate removal story. Please feel free to contact me if anyone has any questions...
Gary....rce789(at)yahoo.com
Wow!! Congratulations!! I’m super happy everything worked out for you! (Praise God)!!
I forgot who we spoke with at The Cleveland Clinic, but we were super comfortable with them as well, but ended up going with Karnes. My father was definitely in pain, but after being told no one could help us and that we should consider palliative care, my father could care less about the pain since he knew he was going to live!
Congratulations again and thanks for sharing your story!
Thank you grr256 for such through response. Our direction has changed; we opted for high dose at UCLA. Our radiation therapist thinks he has a very good chance of curing the cancer with radiation. His urologists agrees.
We had a very weird turn of events though...went to get the radiation and once he was under anesthesia, they discovered a false passage in his urethrae. They aborted the procedure and we are waiting a few weeks for it to heal. In the mean time they put him on a very strong hormone to shrink the tumor - Orgobyx. We do PSAs today and if it continues to go down, we will go and get the High Dose in May. If the false passage does not heal by then, we may opt for surgery. No one here will touch him, so it would have to be one of your doctors in the Midwest. We will cross that bridge at a later date. We are staying positive and his quality of life is fairly good.
Thanks again for all the feedback!
I am having the single port robotic prostatectomy with Dr Kaouk in about three weeks. My PSA was 14 back in September, which led to a surgeon search. In fact, I want to thank those members in this thread for helping me get to this point. You guys are very much appreciated. Having prostate cancer with a j-pouch limits our options but it can be done successfully. If you’re in the same boat, check out the single-port procedure. I’ll update this page after having mine.
Praying for a successful surgery! I’m sure all will be fine! Can’t wait for your good report!
I had robotic surgery in 2020 at Keck USC Medical Center. My surgeon was Dr. Inderbir Gil. I have been cancer free for a year now. My prayers are with you for a speedy recovery.
Just to circle back, I had the single-port radical prostatectomy with Dr. Kaouk at Cleveland Clinic less than a week ago. I am amazed at how well I feel. I have about a three-inch incision below my navel, definitely some soreness whenever I use my abs, but not the incontinence for which I was warned. J-pouchers already have the muscle tone necessary. I have had no incontinence issues, even overnight. The foley catheter was the most annoying and most uncomfortable part of the surgery. Fortunately, the surgeon’s office had it pulled after only three days. If you’ve been diagnosed with prostate cancer and are looking at your options, consider this procedure. I can provide more info if interested.
Thank you so much for the feedback. I appreciate it. We are still leaning for the Radiation at UCLA. Our docs seem to all agree it is the best path. My husband has too many adhesions. We are doing it in May and will report results. I am petrified about possible incontinence.
Thanks again!
Just so you’re aware, the single-port procedure is ideal for patients with a lot of scar tissue. The surgeon operates through the bladder (transvesicle process) to get to the prostate and is able to bypass all the adhesions caused by the pouch surgery.
